Despite fibromyalgia being a disease that heavily impacts one’s musculature system, it’s been discovered that it actually stems from an injured CNS system. It’s the injury that mystifies the scientists but it’s accepted all the same. How do we get the word out to the medical professional community so that they can get us to the correct specialists (a rheumatologist does not have expertise in CNS dysfunction nor does a pain specialist either really). These doctors don’t have any continuing education regarding this issue nor I expect do the monsters over at the disability office. I want for this to get out there in a big, striking way that gets noticed and integrated into medical care and disability review manuals. I want my disability to be acknowledged and properly addressed. I want no doctor to ever say to their patients “at least it won’t kill you” because they have been properly educated and trained to manage the condition and truly understand that the suicide rate for this disease is crazy high and therefore it can actually kill me. I want doctors to hear me and quit recommending that I simply drink more water, go for a walk and eat better. I do when I am able but it’s the able that is in question. Sure these are important to any human improving their health but it’s not going to cure me anymore that it’ll cure cancer, hepatitis or diabetes. Everyone acknowledges that these other illnesses require medical treatment and interventions. Perhaps I’m having trouble losing weight because my metabolism is controlled by my CNS. And antidepressants may help one aspect of my condition but it’s not going to cure lit. I’d be willing to try some Victorian medicine that includes opium and organisms (google it) but telling me that I’m sad and I’d feel better if I put some makeup on doesn’t work for me. So any recommendations on how to spread the word would be greatly appreciated. We deserve to be taken seriously and treated in a dignified manner. Apologies that my question was also a rant.

I would, honestly, rather hurt. I've been on all the antidepressants, with off-label uses for fibro pain, that they are throwing at me . I was on duloxetine and had constant diarrhea, so I stopped. Now I'm on venlafaxine, and I feel like I'm going to vomit, in spite of eating twice. I have the internal tremors that I get on my bad days, and I want to cry. My head feels like it wants to explode from pressure. This is only the first 37.5mg dose, but I can't take this for 2 weeks or more. I would rather be in pain than feel like this.

Today I had my first appointment with my new physio. She's lovely. She stops me at every point and asks me where it feels tense/ sore and immediately modifies it for me.

However she did have my referral notes on her desk from rheumatology and at the end of the page was a paragraph stating that "patient presented with much misinformation about her pain. She disclosed she can dislocate her shoulders at will and during pregnancy her pelvis separated. This gives a false narrative to her pain and needs to be remedied as to not hinder her progress in clinic."

Except that I CAN dislocate my shoulders, she told me herself that my shoulders are hypermobile and "floppy". I have constant nerve pain, torn and sprained ligaments and muscle in my arms multiple times from it. But she said in clinic that it's false and only blunt force trauma can dislocate them.

Also, at 6 months pregnant my hips did separate from pelvic muscles failing and I was put on strict bed rest, given a binder to keep my hips stable and given crutches and a wheelchair. I didn't just decide to do that for myself like?! Also given physio after to help me regain pelvic strength. I was told any other pregnancy will hold the same/ more risk but again she said that can only happen in trauma like a car crash and that I likely just had pelvic pain.

I didn't like how she said it in the clinic but now to see she's put it in my notes that reads as I'm making up stories and my pain isn't real. I walked out so upset today, it's really bothering me.

Sometimes it seems like doctors are afraid of us. When I meet new ones they seem so guarded, like I am going to demand opioids, or be some horrible patient who is going to keep them in the the room for an hour past my appointment or call/message once a week.

Where does this stigma come from?

It’s 3 hours long on Audible and a very easy read. It focuses on people who have physical and/or mental disabilities that make it difficult to stay organized around your house.

Only about 30% I felt applied to people with only physical disabilities, but they were good bits.

If you’re feeling down about your space, it might help.

I don’t really know where else to say this because I need to speak to real people who might actually understand.

I have chronic pain and a recent MRI showed five new problems with my back and neck. I am paying for private physio because I am trying so hard to help myself and keep functioning, but some days the pain is relentless. It affects my concentration, memory, speech and ability to do basic things. I drop things, muddle words up and need constant brain breaks. I already feel useless enough without other people making me feel like a burden or inconvenience.

Work has become horrible. I have agreed reasonable adjustments but even getting basic things in place has repeatedly been difficult. People know I have serious back problems, yet I am treated like I am difficult for needing boundaries or asking people to be considerate.

Recently colleagues put me in a situation at work where I got hurt, and somehow the responsibility was pushed back onto me. All I had been doing was sitting there working. Instead of anyone checking whether I was okay, the focus immediately became defending the other person and making me feel like my reaction was the problem.

I know nobody deliberately tried to hurt me. That was never the point. The point was that I was physically hurting and nobody seemed to care. I felt completely dismissed as a human being. When I later tried to explain calmly why it had upset me, people became defensive and blamed me for not preventing the situation myself.

Since then people have been cold, short or have blanked me, as though setting professional boundaries and saying that something hurt me makes me a bad person.

I hate posting online and I hate being around people at the moment because it feels like people are just cold to each other all the time now. Like social skills and empathy have disappeared.

Being told my whole life that I moan too much or complain too much has completely shattered my self-esteem. I now won’t ask anything of anyone. Want to go to the cinema? I won’t ask. Birthday party or night out for me? Absolutely not. I feel undeserving of attention.

But I always try with other people. I try to be empathetic and kind. I help people, take on extra work and try to make things easier for everyone else. I feel used and I feel like nobody notices how much I am struggling.

I was watching my family at a party recently and instead of being able to enjoy being with them, I found myself wondering whether they would ever understand if one day I just couldn’t take it anymore. Whether they would understand that it wasn’t because I didn’t love them, but because the pain and constant struggle had become too much to bear.

I am just lonely. I am tired of always feeling like I am on the outside, tired of being the one who tries, tired of being treated like I am difficult for having needs, and tired of feeling like nobody would choose me unless I was useful to them.

I don’t want judgement or to be told to stay positive. I just need to speak to real people who understand chronic pain, loneliness and what it is like to keep functioning while feeling completely worn down. How do you cope when the physical pain is bad and the people around you make the emotional side even harder?

I will add I would never call any of you useless either even though I feel it about myself. I feel like I can't be kind to myself and I don't know why :(

After several hours of work yesterday, half of the bedroom floor is visible. As a punishment, my fibro has given me 12+ hours (so far) of pain and nausea. It's like hubris but from the old hellenic style where you get punished for things like 'being good at weaving' or 'being attractive' or 'didn't sacrifice a good enough cow.'

I wouldn't wish fibromyalgia on anyone except people who post about how pain means you're alive or how you have to sacrifice for growth etc., just long enough for them to understand and then they can have a break too.

It's definitely not as big of a deal as the rest of the bullshit we deal with, but today I finally got rid of (donated) all my beautiful, amazing high heels. I haven't been able to wear them in years. I walk with a cane. My hips spasm and knees buckle. But damn if I won't miss those pretty things.

Idk what i was expecting or hoping i guess i was hoping it was anything curable tho i guess i knew this was it i mean i have answers now so thats good

But this is all overwhelming for me all new for me even tho i struggled for a while i always had hope for a cure now thats gone and treatments alot of work my other disabilities make treatment near impossible this is alot for me

Looking for a good suggestion for a folding walking cane. Not anything too expensive but with a cute print. TIA!!

My PCP gave me another referral to the rheumatologist.

Finally get on the phone with scheduling, they tell me that one of the rheumatologists doesn't treat fibromyalgia but can treat the other stuff (arthritis & hyper mobility); luckily, they have another rheumatologist who does treat fibro, but they're not available for two months.

At least now I have an appointment for the 21st of September, which I definitely will remember🫩

I'm perplexed about how a doctor can refuse to treat a disease. And I'm frustrated that I have been trying to get in with a rheumatologist since February but it seems impossible to get them on the phone to make the appointment.

And now I can feel the burning in my spine flaring up; fuck my day, I guess.

Why is there such lack of care around our battle?? I've seen so much community support and love for other diagnosises but fibro?? Nothing!

It makes me feel as if im in a bubble that no one can see or understand. Just full of confused sympathetic glances as I try and try to make people understand.

It makes me angry but god I'm too tired to do anything about it.

I'm perfectly aware that mental health issues are part of fibromyalgia or chronic illness in general. I went to therapy and thankfully managed to leave the worst of the depression and anxiety behind me.

But lately I've been noticing a pattern: Manageable pain level, I'm feeling more or less okay, doing my thing, living my life as well as possible. And then I'm suddenly hit by a terrible wave of insecurity and self-hatred and I feel like a bullied teenager again (I'm in my 30s, for fuck's sake). AND THEN, every time, about an hour later, the pain is there. A massive fucking pain flare that keeps me up all night.

So now I'm wondering: Are those mental health issues causing the pain or are they a sign that a flare is coming?

Is anybody else experiencing something like this?

I had a really difficult day yesterday and I’m struggling to process what happened. I’m 23 and have been dealing with severe pain for years. I have documented abdominal and menstrual pain since I was 12, chronic pelvic pain, and during a laparoscopy I had pelvic adhesions removed. The pathology for endometriosis was inconclusive, but my symptoms have continued and I’m still waiting for further gynaecology input.

I was diagnosed with fibromyalgia, but I feel like this diagnosis has become the explanation for everything. I do have fibromyalgia pain, but the pelvic/abdominal pain I experience feels completely different — it is acute, severe, and feels like the pain I had before my surgery and before the Mirena coil. I am still being investigated for possible endometriosis/other gynaecological causes.

Yesterday I woke up in agony. I was curled up in bed crying with severe pelvic pain, unable to shower or prepare food, and struggling to cope. I explained to my GP that I live alone and that the pain has got to the point where I have felt suicidal because I feel so desperate for someone to listen (I am safe and not planning to harm myself).

During the appointment I became very emotional and said “I feel fucking suicidal” while trying to explain how desperate I felt. I apologised afterwards for swearing because I understand doctors can have boundaries around language. However, I felt hurt because the conversation seemed to focus more on my language than the distress behind what I was trying to communicate.

The GP told me I needed to “learn to live with my pain” and suggested physio. She also suggested my stomach pain could be coming from my back. I understand referred pain exists, but I felt like my pelvic symptoms were being dismissed rather than explored.

I also felt frustrated because previously my upper back pain was attributed to fibromyalgia, but a junior doctor listened to me and further investigation led to a scoliosis diagnosis.

I used to work in healthcare myself, so I understand the pressures doctors are under and I understand setting boundaries. I’m not expecting anyone to magically fix chronic pain, but I wanted someone to acknowledge how disabling this has become and help me manage while I’m waiting for specialists.

Am I being unreasonable for feeling upset by this? Has anyone else experienced their pelvic pain being dismissed after a fibromyalgia diagnosis? How did you get doctors to understand that not all of your pain is the same?

Wondering if anyone else has had a similar experience? I've been getting steriod shots every 3 to 4 months in two of my worst trigger spots. Usually the first 2 days after the shot I'm sore and tender and joke that I regret getting the shot. But then I do get a few months of relief.

This week, I went in for my next round of shots and it was a horrific experience. It was like a full body system inflammation bomb went off in my body. I was nearly incapacitated. It was the worst pain I've ever experienced. It reminded me of when you get a vaccine and for a few days you feel like trash. It was just like the pain dial was turned up to 100.

I know fibro can be a petty disease and take any opportunity to be mad, this just felt really extreme and intense.

Just came from the rheumatologist where I was told the medications I'm on seem to be covering all the bases and I need to just get some more excercise.

Dude, I have been suffering for TWENTY YEARS. I guess I thought by 2026 there would be some breakthroughs or some shit. But I guess not. My whole life was upended, I hate it and I grieve for the life I never got to have. I guess you have to have a pain level of 10 for them to do anything.

I hate the future.

Thank you, that is all.

How do I explain to my mom that my chronic illness and pain that overtook me at 24, will last forever, I will be disabled forever, even though I wasn’t born with it.

I can do things to slowly improve but only to an extent. Yes I do have to stay on medication my whole life unless some new medical intervention in the far future.

Video suggests or something! No books.

I literally told her, “Mom, I was not born with pink hair but I have it now. Thats how my illnesses worked too.

It’s 3 hours long on Audible and a very easy read. It focuses on people who have physical and/or mental disabilities that make it difficult to stay organized around your house.

Only about 30% I felt applied to people with only physical disabilities, but they were good bits.

If you’re feeling down about your space, it might help.

Hello, last Thursday I was invited on a walk, I miss walking. I considered that if I could stop and rest every 400 meters I'd be ok. Stopped and sat on someone's was less than 400 meters in but then had to do what was probably 800m cos there was nothing to sit on, sat then for almost 2 hours in a cafe. Set off at 10 am didn't get back till 3. I really started to struggle so sat down on park benches, people's house steps, I should have been more clear about how much I struggle to walk too far.

Sunday I started to feel weak, Monday I felt unwell and needed more co codomol than I would usually take. Went to bed Monday at about 8.30 and apart from the loo which has been difficult I haven't shifted from my bed. I have never felt so wiped out. Yesterday I started to sweat reallt badly, pyjamas sodden, hair sodden, then around 8pm I was shivering so much it was painful. My body has been in constant pain since Sunday, maybe before Monday but reaching unbearable by Monday.

Could this be something other than a flair and has anyone witnessed the same?

Just wanted to share that in Europe a natural remedy is very popular for fibro and chronic pain.

It is called PEA

and is available in USA and Canada too at health stores.

Completely natural and having zero side effects it acts similar to lyrica or gaba pentin and blocks pain at the nerves.

It is worth a try for those who cannot handle the side effects of medications.

Hi everyone,
I (39F) have been living with some form of chronic pain for as long as I can remember, and I’m wondering if anyone else can relate.
In elementary school, it was debilitating migraines that kept me home from school. Once I hit puberty, it became migraines plus severe menstrual pain. At 16, I started experiencing unexplained abdominal pain that eventually led to having both my appendix and gallbladder removed.
In 2015, I was diagnosed with endometriosis. Since then, I’ve had multiple excision surgeries and eventually a total hysterectomy due to endometriosis and PCOS.
In 2017, I was officially diagnosed with fibromyalgia. Unfortunately, I’ve failed every medication I’ve tried for it. The one treatment that has helped the most has been lidocaine infusions, and after finally getting cardiac clearance, I’m scheduled to restart them tomorrow. I’m really hoping they provide some relief.
Lately, though, I’ve been struggling with something beyond just the physical pain. Living with pain day after day is exhausting, especially when a flare lasts well beyond a week.
I’d really love to hear from others who understand.
● How have you found purpose or meaning while living with chronic pain?
● What helps you cope mentally and emotionally during bad flare days?
● What do you do when a flare just won’t let up?
● How do you keep yourself from feeling discouraged or hopeless during long stretches of pain?
● Have you found any non-medication strategies that genuinely make a difference?
● If you’ve been dealing with chronic pain for years, what do you wish someone had told you early on?
Any advice, encouragement, or personal experiences would mean so much to me. Thank you for taking the time to read this. ❤️

Does your ribcage often hurt at night, preventing sleep and can't be comfortable at all?

hi everyone :-)

sorry for asking so many questions.. i was curious about what mobility aids are used to help deal with fibro. i previously used an adjustable aluminum cane for a bit, but stopped after becoming insecure about judgement. i wanted to ask what you guys might be using to help, just for me to keep in mind some aids for the future.

Does here anyone deal with Autoimmune/Inflammatory Syndrome Induced by Adjuvants (ASIA Syndrome). And how you manage it? Did you get proper diagnosis?

Not officially diagnosed as no doctor in 10 years has thought to look into why I’m always in pain but my new pcp said my issues sound like fibromyalgia so hopefully I can get somewhere with him. For context I have NDPH (24/7 headache and migraines 15 days a month, they do not respond to any medication or treatment nothing touches my pain). They’re unmedicated bc my specialist is out of options and her suggestion was to see a pain specialist who could only do nerve blocks which caused me such severe bone on bone pain that took 6 weeks to go away and he couldn’t do anything else. Pain meds (OTC, toradol, Tylenol 2, muscle relaxers, roll ons, etc) do nothing for me. I do my PT exercises and stretches every night. I sleep on my stomach it’s the only way I can fall asleep and I don’t sleep with a pillow bc any put my neck at an awkward angle. I can’t sleep on my slide it’s uncomfortable on my shoulder. I cannot sleep comfortably I wake up constantly bc my body aches. I’m having to nap during the day bc I sleep like shit. I so badly just wanna sleep without pain. I’m hoping to ask my doctor on Monday for either meds to help the pain or sleep meds